The Canadian Amyloidosis Support Network, Inc. is a not-for-profit, all volunteer organization, formed by amyloidosis patients and family members of amyloidosis patients. This Support Network refers to their commitment to making a positive difference in the lives of patients and families. This organization has been formed in loving memory of late Allan Sone, and the …
Stephen E. Fink was a son, a brother, an uncle, and a father. Born on December 2, 1950, Steve was the youngest of four children. He grew up in Claremont and later West Covina. In September 2009, Steve complained of shortness of breath, fatigue, and leg swelling. After extensive tests, this healthy, active, charismatic man …
Rare Disease Legislative Advocates (RDLA), is a program of the Every Life Foundation for Rare Diseases, a non-profit organization dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the Every Life Foundation for …
Present Troubles Racing is a non-profit organization that raises funds and awareness about amyloidosis and support individuals and their families who are affected by this life threatening disease through participation in multi-sport events such as running, biking, and triathlons. The majority of their funds come from private donations, although fundraising events are in planning stages. …
Unser Verein verfolgt den Gedanken der Selbsthilfe. Das heißt, wir sind ausschließlich den Interessen von Menschen, die an FAP oder einer anderen Form der Amyloidose erkrankt sind und ihren Angehörigen verpflichtet. Wir unterstützen unsere Mitglieder beim Leben mit der Erkrankung, indem wir uns für eine bessere Anerkennung und Gleichstellung in der Gesellschaft und für medizinische …
Patient Advocate Foundation is a national 501 (c)(3) non-profit charity organization that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctor. To fulfill its mission, PAF is supported day-to-day by its leadership team and patient services are carried out by a stable …
The PAN Foundation is an independent, national 501 (c) (3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Since 2004, we have provided nearly 1 million underinsured patients with $ 3 billion in financial assistance. Partnering with generous donors, …
The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications. Access to continuing education opportunities, professional resources, advocacy and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC. Mission: The National …
National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. If you …
Myeloma UK is the only organization in the United Kingdom dealing exclusively with myeloma goal to find a cure. The organization is dedicated to myeloma patients – making sure they get access to the right treatment at the right time. They continually strive to improve standards of treatment and care through research, education and raising …